Ildiko ☕️ @IldikoMe Twitter profile

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Ildiko ☕️

2 years

The #1 thing I hear from parents of kids with #IBD is: "my heart breaks every single day". Whether in remission or not, the disease is a persistent and heavy burden on patients & families. With all the noise, it's important not to lose sight of this fact. #crohns #UC

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Ildiko ☕️

@IldikoMe

2 years

@DrHarryThomas My first rule: don’t listen to anyone that claims to cure a disease they cannot correctly spell.

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Ildiko ☕️

@IldikoMe

5 months

@yashar @still_oppressed Perhaps their anger should be directed at Hamas and at jihadist groups more generally.

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Ildiko ☕️

@IldikoMe

6 months

@harnevo This is phenomenal. Thank you. And shame on any platform @X that would remove this video while simultaneously spreading fake Hamas propaganda videos without even adding @CommunityNotes .

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Ildiko ☕️

@IldikoMe

4 months

As we wind down 2023, I offer here a 🧵of my top #IBD papers published this year. These are exceptional. And the good news is this is not a short list. I have categorized them into areas I think are important and deserve the most focus of our collective efforts. But first, some…

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Ildiko ☕️

@IldikoMe

3 years

Types of IBD papers: We found microbe(s) that exacerbate(s) inflammation (in 🐭) We found biomarkers with OK sensitivity/specificity no one will use Untreated inflammation is bad We found more 🧬 variants w/ OR 1.03 We selectively review diet research and conclude nothing

Randall Munroe

@xkcd

3 years

Types of Scientific Paper

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Ildiko ☕️

@IldikoMe

2 years

There are many people I have met in the #IBD community who have been in sustained deep remission for over a decade. We need to study these people. This actually isn’t even difficult. Who wants to volunteer to do this?

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Ildiko ☕️

@IldikoMe

2 years

What is holding us back in #IBD ? Why, after many decades of research do we have such limited understanding of etiology and pathogenesis? Why are our classifications of IBDs so dated and simplistic? Some thoughts to follow, but I would sincerely like everyone’s views. #crohns #UC

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Ildiko ☕️

@IldikoMe

1 month

I have been eagerly waiting for publication of this study. Proof of concept of a whole food smoothie diet (plus multivitamin) with excellent clinical and biochemical results in just 4 weeks in an adolescent #Crohn ’s. Thank you so much to @kimbralyRD and to the whole Seattle…

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Ildiko ☕️

@IldikoMe

1 year

🏆 #GItwitter role model for bringing patients/caregivers to #IBD conferences @GKochharMD . We met on twitter, he invited me to the ‘Burgh, we talked, connected, and had incredible homemade Indian food. This is human connection and how we’ll advance understanding and patient care.

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Ildiko ☕️

@IldikoMe

1 year

We need more debate in #IBD Conferences should include “challenging conventional dogma” presentations Presentations should have “what is known” & “what is new” sections to deter recycling Panels should include diversity of views; no manels but also no groupthink

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Ildiko ☕️

@IldikoMe

4 months

This girl broke her high school’s record for the 3000m, running at 10pm last night, her first time in this distance. Her kick in the last two laps was incredible. In the last week, she also laid down fast PRs in the mile and 800m. She currently has the fastest 1500m time by a…

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Ildiko ☕️

@IldikoMe

2 years

An arrangement from my garden. What a gorgeous day. Happy Sunday to you all.

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Ildiko ☕️

@IldikoMe

8 months

Although I have been quieter here lately, it’s for good reasons, I promise. Change is in the air. But one thing will not change: everything I do is to ensure that kids and adults with #IBD can be as healthy, happy, and productive as they choose to be. If she can run 8 miles in…

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Ildiko ☕️

@IldikoMe

3 years

I’d like to see intestinal ultrasound (IUS) become standard of care in the U.S. It’s cheap, non-invasive, doable bedside, precise and reliable (~90% sensitivity and even higher specificity, compared to scopes and MREs). Europe is leading the way here.

Bowel Ultrasound in Inflammatory Bowel Disease: How Far in the Grayscale?

Bowel ultrasound (BUS) is a non-invasive and accurate technique for assessing activity, extension of disease, and complications in inflammatory bowel diseases. The main advantages of BUS are its...

www.mdpi.com

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Ildiko ☕️

@IldikoMe

2 years

We were incredibly grateful to participate in IBUS Mod 1 and see first-hand the transformative impact ultrasound has in the management of #IBD . A huge thank you to the rockstars @KrugCleveland and @DrMikeDolinger for your professionalism, competence and kindness. Also 🙏 @IBDMD .

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Ildiko ☕️

@IldikoMe

3 years

I’ve been mostly away from Twitter working on a new important endeavor.

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Ildiko ☕️

@IldikoMe

2 years

I know that whenever I criticize #IBD conferences I am being “controversial” but I am far from alone in wondering what is actually gained by patients from the very many annual not inexpensive gatherings? A 🧵.

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Ildiko ☕️

@IldikoMe

1 year

@DrHarryThomas With apologies to all the wonderful people I have met here, you included, it’s still a toss-up between the Four Seasons Total Landscaping press conference and Zoom cat lawyer.

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Ildiko ☕️

@IldikoMe

4 years

My grandparents lived for over a year during the Holocaust in the basement of the hospital in Budapest where my grandfather worked as a surgeon. We can all stay home for a few weeks. #coronavirus #StayHomeSaveLives

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Ildiko ☕️

@IldikoMe

7 months

Proof-of-concept clinical trial of transcutaneous vagus nerve stimulation ( #VNS ) in pediatric #IBD shows a ≥ 50% reduction in calprotectin in 11/17 (64.7%).

Transcutaneous auricular vagus nerve stimulation attenuates inflammatory bowel disease in children:...

Background Vagus nerve stimulation is an investigational anti-inflammatory therapy targeting the nervous system to modulate immune activity. This study evaluated the efficacy and safety of transcut...

bioelecmed.biomedcentral.com

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Ildiko ☕️

@IldikoMe

2 years

@DBelardoMD @GomerBlog These memes get so old and are so silly. I assure you when you build a house or have a serious legal issue, you will be doing ample research on the internet. Give patients more credit.

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Ildiko ☕️

@IldikoMe

2 years

Can I kindly ask somethink of #GITwitter ? If you share a recent paper, poster, conference presentation etc. that you authored or contributed to, please tweet the key findings and implications for advancing our knowledge and/or patient care—not just the humblebrag.

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Ildiko ☕️

@IldikoMe

2 years

The last weeks have been some of my proudest as a parent. She is amazing and what her teachers wrote moved me. She’s why I’m here—and will continue to be here—advocating and pushing the #IBD field to do better. It’s for her and for all the kids who aren’t as fortunate as we are.

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Ildiko ☕️

@IldikoMe

2 years

There are more GI conferences than there are movie and television award ceremonies. And yet progress is 🐢. Perhaps it’s time to rethink how we can use valuable time more effectively to drive meaningful progress for kids and adults living every day with #IBD . #GITwitter

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Ildiko ☕️

@IldikoMe

2 years

Proud mom moment: a Science Olympiad🥇for my girl and her partner yesterday. 👏

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Ildiko ☕️

@IldikoMe

6 months

The mothers and 10-year old in this photo have: - chaired and served on the Board or other leadership roles in @ImproveCareNow - started an autoimmune liver disease learning network - led #IBD advocacy initiatives - started a VEO IBD nonprofit and support group - created and…

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Ildiko ☕️

@IldikoMe

2 years

I know I’m a giant pain in the butt 🍑 advocating for kids and adults with #IBD to #GITwitter but I also know if anyone can handle it, by definition, it’s the GI community.

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Ildiko ☕️

@IldikoMe

2 months

I would like to call on the entire #GI and #IBD community to advocate for a hostage in Gaza with #Crohn ’s who has been without his medications for over 150 days. He is a father, a grandfather, and my heart goes out to him and his family. #GItwitter

Bring Them Home Now

@bringhomenow

2 months

When the Hamas terrorist organization attack started on October 7th, Michel Nisenbaum was on his way to pick up his four-year-old granddaughter from Reim, where she had spent the weekend with her father. However, he was unable to reach her and was abducted to Gaza on his way…

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Ildiko ☕️

@IldikoMe

2 years

This is SPOT ON. An honest assessment of the mediocrity of current and pipeline #IBD therapies, how simplistic and tangential they are in a complex disease, and where we need to go (hint: it’s NOT dual biologics). h/t @propelacure ; thanks @CleClinicMD

Current Therapy in Inflammatory Bowel Disease: Why and How We Need to Change?

Inflammatory bowel disease (IBD) represents a group of idiopathic chronic inflammatory disorders of the gastrointestinal tract, including...

www.emjreviews.com

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Ildiko ☕️

@IldikoMe

2 years

I’m a little late because of visiting with family in Austin, but I want to sincerely thank everyone at @ImproveCareNow @ICNParents @ICNPatients for the most inspiring conference. You all lead with vision & purpose to improve care for kids with #IBD and that means the 🌎 #ICNCC22F

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Ildiko ☕️

@IldikoMe

2 years

As we close out 2021, I want to say a profound thank you to everyone that has followed me, engaged with me, educated me, DMed me and even Zoomed with me. 🙏 I came to twitter late largely to observe the GI / IBD community. Looking ahead, 2022 is going to be a bit different.

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Ildiko ☕️

@IldikoMe

2 months

Here’s the problem with misleading headlines at large #IBD conferences delivered by KOLs and the subsequent publications “summarizing” these that are then spread far and wide: they lack nuance and lead to bad clinical practice that does not serve patients. I would argue it…

Crohn's & Colitis Australia

@crohnscolitisau

2 months

A study led by University of Cambridge researchers and published in The Lancet found that administering the Infliximab shortly after the diagnosis of Crohn’s disease can significantly reduce complications compared to other treatment methods.

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Ildiko ☕️

@IldikoMe

7 months

It has been a horrifying 9 days for many in our community in Israel and abroad and it will continue to be difficult. I see you, support you, and am heartbroken with you. The responses (and lack thereof) to these uniquely barbaric events have also been illuminating. As…

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Ildiko ☕️

@IldikoMe

7 months

@charlie_lees Patients have been told this for decades. A cure is always 10 years away. We need less focus on the “future of IBD” or “in 10 years”, fewer niceties, and more concrete collaboration and action to help patients now.

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Ildiko ☕️

@IldikoMe

6 months

@BillAckman @Harvard @MIT That is the immediate problem but more broadly the failure of high school curricula to teach critical thinking and a framework for civil discourse as well as the clearly misguided admissions criteria at leading universities need to be addressed. They could have anyone and they…

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Ildiko ☕️

@IldikoMe

7 months

To our incredible Jewish #IBD and GI community, especially those in Israel, my heart is broken with you all, both because of the unimaginable horror that Hamas has inflicted on innocent people and the abject stupidity and moral bankruptcy of some reactions to these events. We…

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Ildiko ☕️

@IldikoMe

3 months

A very special thank you to all the GIs, dietitians, researchers, nurses and psychologists (what group did I miss?) who have #IBD or have a loved one with IBD and share their personal stories publicly. #UC #Crohn ’s

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Ildiko ☕️

@IldikoMe

3 years

For anyone interested, the #ECCO2021 IBD posters and presentations are accessible for free here: Thank you to the conference organizers, I always appreciate when science is made accessible.

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Ildiko ☕️

@IldikoMe

2 years

#GITwitter #IBD #crohns #UC twitter! Today is my birthday and I’d appreciate your support for We’re grassroots, ambitious & laser focused on cures We have funded ongoing research at Stanford looking for antigens Donations will be matched by me 🙏

Crohn's Research Projects

Learn about our ongoing efforts to find a cure for Crohn's disease.

www.propelacure.org

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Ildiko ☕️

@IldikoMe

2 years

Unpopular opinion: KOLs should disclose conflicts when tweeting about drugs, especially newly approved ones. #GITwitter #IBD

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Ildiko ☕️

@IldikoMe

1 year

“If we’re going to find a way to prevent Crohn’s disease and ulcerative colitis, it will require the global GI community actively embracing this new paradigm of prediction and prevention” @JeanFredericCo1

Icahn School of Medicine at Mount Sinai

@IcahnMountSinai

1 year

Mount Sinai researchers have found strong evidence that before the first symptoms of Crohn’s disease and ulcerative colitis occur, there’s a preclinical phase in which immune and inflammatory pathways are already altered:

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Ildiko ☕️

@IldikoMe

2 years

If you’re in the #IBD field, hopefully you closely follow nutrition and microbiome research, but if anyone needs a crash course, this is an excellent and comprehensive paper (not IBD specific).

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Ildiko ☕️

@IldikoMe

6 months

As many of you know, I joined this platform for #GITwitter and #IBD research and advocacy. I’ve remained laser-focused on this and so understand the desire to stay out of geopolitical issues you may not fully understand. But I now believe we are at a critical inflection point for…

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Ildiko ☕️

@IldikoMe

1 year

The longer I observe the #IBD field the more stark bias in language becomes: Dietary Tx have “low quality evidence”, are “restrictive”, “difficult”, and raise risks of disordered eating Rx are “effective as early as…” with “no new safety signals” Reality is nuanced for both.

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Ildiko ☕️

@IldikoMe

2 years

I’m trying to accelerate cures for #IBDs over here and would really appreciate it if we could dispense with the distractions of multi-year global pandemics and potential wars with Russia.

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Ildiko ☕️

@IldikoMe

11 months

Worth watching the 8 min video and reading the open access paper by @h_sokol (and others). Indeed, the relevance of tryptophan metabolism pathways and AhR in #IBD has been studied for at least two decades and was the subject of several excellent presentations at #DDW2023 . But…

Gut Journal

@Gut_BMJ

11 months

Brilliant #GUTVideo by @h_sokol on the paper by @ChloeMichaudel @h_sokol et al on "Rewiring the altered tryptophan metabolism as a novel therapeutic strategy in inflammatory bowel diseases" via Paper: @J_Kirchgesner

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Ildiko ☕️

@IldikoMe

10 months

As always, let’s do the math. 544/1281 primary responders (42%) 50% of responders were in clinical remission at week 52 = 21% of patients receiving mirikizumab vs 10.5% of patients receiving placebo in the maintenance phase Net benefit of ~10% Efficacy is roughly the…

Taku Kobayashi

@TakuKobayashiM1

10 months

First anti-IL-23p19 for UC Mirikizumab as Induction and Maintenance Therapy for Ulcerative Colitis | NEJM

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Ildiko ☕️

@IldikoMe

11 months

I know many people are working very hard to change the status quo, drive a deeper understanding of IBD pathogenesis and develop much better treatments and cures (and prevention). 🙋🏻‍♀️👨‍🔬👨🏽‍⚕️🧑🏻‍⚕️ But this feeling in the quote below is very pervasive in our community and it’s important…

Propel a Cure for Crohn’s Disease

@propelacure

11 months

Although each new #Crohns drug is touted with great fanfare as it enters the market, the reality is they don't work or lose effectiveness for the many who cycle through all the available options. We URGENTLY need to think outside the box & find better, safer treatments & CURES.

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Ildiko ☕️

@IldikoMe

2 years

Every one of us should ask ourselves regularly whether what we are spending our professional (and volunteer) time on will make #IBD patient outcomes better.

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Ildiko ☕️

@IldikoMe

3 years

My IBD twitter feed right now, essentially: - Tofacitinib: don’t worry so much about the FDA warnings! - Ozanimod is a great new option! Just monitor blood counts, liver,🫀👁 and this list of 🚫. - Warning! ⚠️ Dietary therapy has risks and limitations.

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Ildiko ☕️

@IldikoMe

10 months

I’d like to share my views on why @Twitter is vastly better than threads for my purposes and why I will remain active here. Twitter has exceeded my expectations. It allowed me a semi-anonymous platform where, following my child’s idiopathic chronic illness diagnosis, I could be…

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Ildiko ☕️

@IldikoMe

3 months

Let’s make sure #IBD patients are not left behind. Here is an opportunity for our research community to be innovative and truly move the needle towards cures. #UC #Crohn ’s

nature

@Nature

3 months

“Mind blowing, boggling, outstanding” After decades of frustration and failed attempts, scientists might finally be on the cusp of developing therapies to restore immune ‘tolerance’ in conditions such as diabetes, lupus and multiple sclerosis

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Ildiko ☕️

@IldikoMe

2 years

This is spot on and a must read. We urgently need broader and deeper understanding of #IBDs , connecting dots and individualization using tools we have. I am always saying that I know professionally and personally we can do better. Let’s make it happen.

Numbers Do Not Lie: The Dire Need for New Directions in IBD

The challenges posed by inflammatory bowel disease [IBD] are well known by the broad community of patients, investigators and caretakers alike. Efforts on

academic.oup.com

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Ildiko ☕️

@IldikoMe

2 years

A reminder that “many more options” in #IBD isn’t nearly received with as much fanfare and excitement for some of us parents and patients as it seems to be for the physician community. Let’s unpack why this is so.🧵

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Ildiko ☕️

@IldikoMe

3 years

I say all of this and every tweet for only one reason: to help improve IBD patient outcomes, especially for kids. Because it breaks my heart to see kids burn through meds, have poor QoL, and live with pain. And I know from professional and personal experience we can do better. 💜

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Ildiko ☕️

@IldikoMe

8 months

“As a result, blocking one single pathway (ie, JAK/STAT) or one single cytokine (ie, TNF) may not be enough to permanently inhibit an overwhelmingly complex inflammatory process.” Exactly. Understanding the antigen(s) has always been the 🔑 .

Robert Dudkowiak MD, PhD

@drRobinDud

8 months

Groundbreaking publication👇 🫴for aetiopathogenesis & in #UlcerativeColitis 🫳therapeutic intervention Virome-associated protein encoded by Orthohepadnavirus genus 👆👉 hepatitis B virus X protein 🧬HBx @Gut_BMJ @ibdtweets #MedTwitter #GItwitt #MedEd

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Ildiko ☕️

@IldikoMe

3 years

Last day of school, my daughter brought home this gem, a painted tile of my Jewish grandfather—a surgeon who survived the Holocaust hiding in his hospital. That was less than 80 years ago and very much in my thoughts these last weeks. Please speak out against #Antisemitism .

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Ildiko ☕️

@IldikoMe

1 year

Please go visit this booth, especially if you are skeptical or uninterested in dietary therapy in IBD because you saw a presentation that said it’s “restrictive” and has “insufficient evidence”.

Nutritional Therapy for IBD

@NTforIBD

1 year

If you're attending #CCCongress23 , come visit us at Booth 613! We look forward to meeting you and discussing IBD and nutrition. #gitwitter #ibd #colitis #crohns

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Ildiko ☕️

@IldikoMe

5 months

If you want to understand immunological processes (including deep dives into inflammation and processes also relevant in #IBD ), there is no one I think is smarter than @RMedzhitov 🌟 #IBD research and publication needs to expand its authorship and become much more…

The Colitist

@colitist

5 months

Inflammation is a 'mismatch between our evolutionary history and modern environment,' says immunologist Ruslan Medzhitov

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Ildiko ☕️

@IldikoMe

3 years

Also: We found a new drug that can modestly treat 17 IMDs We found that our new (patented) drug is better or safer than older cheaper drugs We found our new drug candidate was 7% better than placebo in patients randomized after early response We found more research is needed

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Ildiko ☕️

@IldikoMe

3 years

Spring in the Philly area is incredibly beautiful.

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Ildiko ☕️

@IldikoMe

2 years

Terrific paper that expands our understanding of gene🧬, microbiome🦠, diet🍎, disease🤒 relationships. Not IBD specific, but a treasure trove of learnings and there's #IBD specific data in Supp. Tables 5,6,7. Would love to see IBD research build on this.

Combined effects of host genetics and diet on human gut microbiota and incident disease in a single...

Nature Genetics - Genome-wide association analysis of gut microbial taxa in a single homogenous population-based cohort of 5,959 Finnish individuals identifies 567 independent SNP–taxon...

www.nature.com

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Ildiko ☕️

@IldikoMe

2 years

It’s good to remind ourselves occasionally why we are on this platform. For me, it’s laser focus on improved outcomes, prevention & cures for #IBD and unraveling disease pathogenesis. I hope to connect dots, connect people and, as a smart person reminded me, make us think.

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Ildiko ☕️

@IldikoMe

2 years

This is definitely on the right track. I hope we get to a point very soon—because it is within reach—where we break through the therapeutic ceiling by combining a biomarker-guided medical therapy and a personalized whole foods (not Western) dietary therapy.

Helmsley Charitable Trust

@HelmsleyTrust

2 years

A new Helmsley-supported @UofGlasgow trial aims to improve patient outcomes in #CrohnsDisease by evaluating the combination of biologic therapies with a dietary intervention.

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Ildiko ☕️

@IldikoMe

2 years

I promised to share some garden photos in May, so here’s my first few. I love the dappled morning or evening light and layering of colors and textures.

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Ildiko ☕️

@IldikoMe

1 year

I get asked a lot why I am on Twitter. I came here late and reluctantly. I am here to challenge dogma in #IBD , promote research excellence & improve outcomes, especially for kids. And I’m here to amplify voices in the community—like Kelly—who relentlessly fight for better too.

Kelly Owens

@awanderingkelly

1 year

It’s difficult to express what it’s like to live in my shoes and experience existence basically in reverse. With it comes immense joy, but also a sense of responsibility and duty. Over the last 5+ years, I’ve gained much insight, and I’ve grown into the woman I am today — 3/

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Ildiko ☕️

@IldikoMe

1 year

So important and great slides by @bverstockt to demonstrate what I think are 3 key issues in #IBD : (1) mucosal healing (MH) is an important target but probably not even enough (2) current Rx have very low rates of MH (3) need to standardize timing and outcome measures for MH

Dominik Bettenworth

@BettenworthDb

1 year

Thank you very much, @bverstockt for delivering an excellent overview on evolving treatment targets in #IBD and rational monitoring strategies at our regional #IBD meeting. @ibdleuven @Y_ECCO_IBD @SeverineVermei1 @SareVerstockt @IBD_FloMD @GianlucaPellino @fgomollon @RajaAtreya

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Ildiko ☕️

@IldikoMe

1 year

@nate_oman I’m so sorry and have been through this torture too. As a fellow lawyer, have you written a letter? Ultimately, after 2 hospital appeals, it was a legal + scientific letter that resulted in approval. Also, lookup the credentials / peds expertise of the GI issuing the denial.

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Ildiko ☕️

@IldikoMe

2 years

Viruses in the gut influence inflammatory bowel disease | National Institutes of Health (NIH)

Viruses in the gut influence inflammatory bowel disease

Viruses isolated from people with inflammatory bowel disease, or IBD, triggered inflammation in human cells and mice, while those from non-diseased guts didn’t.

www.nih.gov

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Ildiko ☕️

@IldikoMe

3 months

What a terrific preprint. We need more preprints generally, more studies that leverage large datasets, and more work that systematically answers key questions. #IBD #Crohn ’s #UC “Using a systematic approach, we report a series of microbiome-derived small molecules that are…

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Ildiko ☕️

@IldikoMe

1 year

The crux of IBD conferences: Is Rx effective? YES Use Rx earlier? YES Use Rx at ⬆️ dose/⬇️ intervals? YES Use Rx post-op? YES Use Rx sequentially? YES Combine Rx? PROBABLY Maybe but healthy skepticism is warranted when data furthers financial incentives + given long-term unknowns

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Ildiko ☕️

@IldikoMe

1 year

Following up on viruses in the pathogenesis of #IBD , why does this topic get little attention? Let's discuss: 2013: 26 pediatric #Crohns patients all positive for Enterovirus B both in the mucosa and in myenteric nerve ganglia, none in controls. 🧵

Ildiko ☕️

@IldikoMe

1 year

Geographic and family clusters of IBD, its presentation—ask many parents and they’ll tell you they intuitively believe some type of infection is relevant to pathogenesis. This is why we need deeper investigation of pathogens and why the literature below (MS etc) is so revelatory.

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Ildiko ☕️

@IldikoMe

1 year

A master class and what we need in #IBD : connecting dots & building frameworks for pathogenesis leading to cures: “we should not forget that the aim is curing IBD and not improving a questionable primary outcome [clinical response] or revenues” h/t @zshrm

Frontiers | Current and future aspects of IBD research and treatment: The 2022 perspective

Inflammatory bowel diseases (IBD) have seen major progress in current concepts and treatment regimes. Based on the theory of an inadequate “overshoot” of the...

www.frontiersin.org

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Ildiko ☕️

@IldikoMe

1 year

FMT+diet not just effective (+ w/ screening, safe) but *superior* to optimized standard medical therapy in #UC . Once again, how many signals from studies will it take before we ask ourselves whether indefinite immunosuppression (especially alone) is the best therapy for #IBD ?

Alexander Link

@alinkmd

1 year

#WhatsNewOnFMT FMT + Diet is effective in inducing maintaining remission in mild/moderate UC patients under standard medical therapy: a randomized controlled trial @EurFmt

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Ildiko ☕️

@IldikoMe

2 years

This ⬇️! Please let’s stop normalizing what our kids and families go through. This isn’t normal and we need better. We get there by believing that we CAN unravel the pathogenesis of #IBDs via collaborative brainstorming and research. We have to believe it is possible and IT IS.

Brittany Louer

@brittany_louer

2 years

As a parent/caregiver of a child who suffers from Crohn’s disease, I can tell you we are mentally, emotionally, and physically exhausted. Our children need a cure! #crohns #ibd #uc #veoibd #findacure

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Ildiko ☕️

@IldikoMe

1 year

@DrTiffTaft @propublica @IBDMD @CrohnsColitisFn @DGlaucomflecken @RexChapman @aboutIBD Thank you @propublica for this incredibly thorough investigation and article. Thanks @EdwardLoftus2 and @DrTiffTaft for being so good at what you do to help patients. And Chris and his parents are absolute heroes.

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Ildiko ☕️

@IldikoMe

3 years

I would appreciate it if #gitwitter could please educate me on why the US has two professional associations for (adult) GI: @AmerGastroAssn and @AmCollegeGastro ? I am genuinely curious.

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Ildiko ☕️

@IldikoMe

2 years

In our latest @propelacure video series with #IBD researchers, we speak with Dr. @BenoitChassaing about: - dietary emulsifiers - microbiome - diet - probiotics and prebiotics and their roles and relationships to #Crohn ’s Please check it out! via @YouTube

Emulsifiers and the Microbiome in Crohn's Disease with Benoit...

Propel a Cure volunteers recently met with Dr. Benoit Chassaing of INSERM (French National Institute of Health and Medical Research) to discuss his latest wo...

www.youtube.com

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Ildiko ☕️

@IldikoMe

2 years

Two things we don’t talk about enough in #IBD : (1) Time (2) Identity My thoughts on each, how they’re related, what we need, and a 🔥 essay from @vagusnervegirl in this 🧵.

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Ildiko ☕️

@IldikoMe

2 years

My husband pointed out that it was hilarious that I wore a red coat to our immigration interview. I had thought it was very patriotic with my white blouse and blue suit but clearly I did not think this through. Fortunately, I had a really nice immigration officer and got a 👍! 🇺🇸

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Ildiko ☕️

@IldikoMe

1 year

How many studies will it take before official guidelines and guidance for everyone but especially #IBD patients (I would argue UC too) is to avoid ultra-processed foods, emulsifiers etc and eat a 🌈 of nutrient-dense whole foods? We are 6 yrs on SCD and began as a skeptic…

Kevin Whelan

@ProfWhelan

1 year

Another epidemiological study showing #UltraProcessedFoods associated with onset of #CrohnsDisease (HR 2) As with other studies, no association with #UlcerativeColitis #UC What is new? In those already with IBD, #UPF ⬆️risk for needing surgery Paper👉🏽

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Ildiko ☕️

@IldikoMe

2 years

Not long ago, my travel plans typically involved some mix of business and time with family and/or friends. Now, my travel is part business, part social, and part #IBD . Those in-person discussions are indispensable. Look forward to meeting as many of you face-to-face as possible.

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Ildiko ☕️

@IldikoMe

2 years

When something is complicated or multi-factorial, it’s tempting to 🙈. But I’ve been saying for yrs that we know more than we say about the diet-🦠-immune 🔄. We can use diet Tx in #IBD . @BarbaraOlendzki has done phenomenal work with IBD-AID, 👏 to all.

Dietary manipulation of the gut microbiome in inflammatory bowel disease patients: Pilot study

Diet is a modifiable, noninvasive, inexpensive behavior that is crucial in shaping the intestinal microbiome. A microbiome “imbalance” or dysbiosis in inflammatory bowel disease (IBD) is linked to ...

www.tandfonline.com

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Ildiko ☕️

@IldikoMe

1 year

This is a contemplative Saturday morning reminder that, whether you’re in pharma (like me), a healthcare provider, a researcher, or a department or hospital administrator, everything has to be about serving the best interests of patients. Anything else is doing it wrong. 1/2

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Ildiko ☕️

@IldikoMe

1 year

One of the 🔑 research Qs we need to be laser-focused on is identifying the antigen(s) in #IBDs . There is a growing body of literature, including recently: Follow-up from authors:

Crohn’s-associated invariant T cells (CAITs) recognise small sulfonate molecules on CD1d

In the recent study by Rosati et al, we described a novel unconventional T cell population enriched in the peripheral blood of patients with Crohn’s disease (CD) and characterised by a semi-invariant...

gut.bmj.com

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Ildiko ☕️

@IldikoMe

2 years

I’m often critical of payors but our children’s hospital charged $40,000 for a single Entyvio infusion and $23,000 for a flex-sig (with anesthesia). That is insane on so many levels including the incentives it produces against managing patients with mesalamine and/or diet.

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Ildiko ☕️

@IldikoMe

1 year

One of many inefficiencies in research that harms patients by (1) slowing down advances and (2) shifting research priorities to maximize grants rather than patient benefits/outcomes. We can do better and one way is developing a global coordinated research plan for #IBD .

Florian Krammer

@florian_krammer

1 year

Amazing work by @SchweigerGerald showing the effort going into writing grants: "Preparing a new proposal takes about 50 working days; at the current success rate, about 300 person-days are spent preparing proposals for a single proposal to be funded."

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Ildiko ☕️

@IldikoMe

2 months

I am here to remind the #GI and #IBD communities *to aspire to do better* for patients, to aim for deeper understanding of disease pathogenesis, to be intellectually curious with each patient, and to incorporate adjunct therapies like diet to improve what I agree are depressing…

Simon Hong

@SimonHongMD

2 months

A pleasure to have #SidSingh from @UCSDHealth at IBD Grand Rounds @nyulangone give a very thought-provoking talk on treat-to-target ▶️ Endo remission is an aspirational goal, but given therapeutic ceiling of current 💊, how far do we push the envelope? 🤔

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Ildiko ☕️

@IldikoMe

2 years

I have had some pretty nice professional successes/accolades but what is truly meaningful to me now is when someone reaches out to me to tell me they follow me here and appreciate my advocacy. Patients, caregivers, physicians & researchers—thank you all, it means the 🌎.

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Ildiko ☕️

@IldikoMe

2 years

The thing I’ve come to learn in my life is that the best people really get it. You will never please everyone but surround yourself with the highest integrity, kindest, and brightest people you can find and things will work out better than you can imagine.

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Ildiko ☕️

@IldikoMe

1 year

Hello, Chicago. So happy to be here. This is an excellent study and very important data to support prior studies. I am most interested in what #IBD experts think this tells us about disease pathogenesis. #DDW2023

Edward Barnes MD MPH

@EdBarnesMD

1 year

In an evaluation from @PREDICTIBD and Danish health registers @ManasiAgrawalMD suggests that early ileocecal resection is associated with improved long term outcomes compared to anti-TNF IN #CD . Real world data following LIR!C trial #DDW2023 @DrTineJess

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Ildiko ☕️

@IldikoMe

2 months

Interesting new letter and paper showing an association between IBD, MS and lymphoma. I continue to urge a close examination of the possible connection between IBD and EBV (I know a great group is now looking at it). But these are the signals we largely ignore for decades while…

Ildiko ☕️

@IldikoMe

2 years

An association between IBD and MS has been observed since at least the 1980s. Both diseases can be relapsing-remitting. Both diseases are treated with immunosuppressants incl corticosteroids, azathioprine, anti-integrins, S1Ps

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Ildiko ☕️

@IldikoMe

1 year

Couldn’t agree more. As a parent, it is also a total game-changer.

Noa Krugliak Cleveland, MD

@KrugCleveland

1 year

THIS is one of many reason to integrate intestinal ultrasound into your practice. Just ask the patients @UChicagoIBD @BowelUltrasound

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Ildiko ☕️

@IldikoMe

2 years

Tonight on a @propelacure Zoom a wonderful young patient said: “I have been following Propel a Cure from my hospital bed.” And this, right here, is why none of us will stop advocating for better for #Crohn ’s Disease until we have cures and prevention.

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Ildiko ☕️

@IldikoMe

2 months

I’m not at #ECCO2024 but would like to dive deeper behind the headlines on #PROFILE to give a parent perspective. 🧵 Congratulations to the study teams and patient participants. Appreciate the tremendous efforts and open access paper here: But this study…

A biomarker-stratified comparison of top-down versus accelerated step-up treatment strategies for...

Top-down treatment with combination infliximab plus immunomodulator achieved substantially better outcomes at 1 year than accelerated step-up treatment. The biomarker did not show clinical utility....

www.thelancet.com

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Ildiko ☕️

@IldikoMe

1 year

A really phenomenal paper (pre-print) using organoids to identify two distinct molecular subtypes of CD in the colon: immune-deficient infectious-CD (IDICD) & stress and senescence-induced fibrostenotic-CD (S2FCD), with proof of concept Tx approaches. #IBD #GITwitter #UC #Crohns

Propel a Cure for Crohn’s Disease

@propelacure

1 year

Not yet peer-reviewed but still, a great read!

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Ildiko ☕️

@IldikoMe

1 year

I have a persistent and overwhelming feeling that we overcomplicate what it would take to cure #IBDs . Whenever I hear “it’s so complex” and “in the next decade we may [fill in the blank]…”, I want to politely suggest they let me in to help tackle the problems.

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Ildiko ☕️

@IldikoMe

2 years

As a parent of a child with #IBD , where outcomes & QoL are still poor for many, where modest progress happens over decades, where still only 1 MoA 💉is approved in peds, and where I’m often told to be grateful & patient b/c “science is slow”, “people are working hard”, YET … 1/2

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Ildiko ☕️

@IldikoMe

2 years

So let’s not make those mistakes again by being overly satisfied with the status quo. It’s good to be grateful and positive, but not at the expense of losing the urgency to innovate, decode and transform our understanding and treatment of IBDs. Patients deserve nothing less.

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